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Topic: How to help my hubby with his ALS fear? (Read 1134 times)

I just wanted to update, in case anyone else is in a similar situation.

The medications have taken his edge away but now he is depressed. He has an intake appt today in psych, and then will hopefully meet with the psychiatrist soon- he is now somewhat more open to counseling even though he still believes he is quite rational. He is still absolutely convinced he has ALS. The ENT doc said his swallowing problems were caused by anxiety, but hubby doesn't believe this. He is going to a fancy hospital near us with an ALS clinic, to meet with an ALS doctor, and get checked out. I would normally say this is nonsense and get angry at him, especially because we will be paying for this out of pocket, but at this point I'm praying the ALS doctor will talk some sense into him and shut this entire thing down. I'm just hoping the doctor is ethical and doesn't order every test in the book (MRI, EMG, etc...) because hubby will freak out and think the doctor must believe he has ALS if all these tests are being performed.

On another note, he called another ALS clinic at a local university and they said they won't see just anyone- they need to see all the patient's medical records, etc..., before they agree to accept the patient. I suspect it is because this "I have ALS" fear is common and they don't want to waste their time. I told my hubby to apply there to see if they would reject him- because they wouldn't think he has ALS. He said they would reject him because his ALS is so obvious that it wouldn't be clinically interesting.

Wanted to add- this is taking a huge toll on his work too. His coworkers are all asking him if he's OK, and he is thinking about sending an ominous email to his colleagues saying he's going through some personal issues now. I think this is a terrible idea- I'd rather he just tell someone he is having some "health issues" and let the grapevine do the spreading. Personal issues are too interesting- people will dive into our private lives. Health issues are much less exciting.

I'm sorry you and your husband have to go through this. At one point in my life, I had convinced myself I had ALS. I read up on it and terrified myself. I had constant twitching (I read that's how it starts) and my limbs began to go numb. The twitching worsened. I knew I had it, I just knew. I drove my husband crazy with statistics about ALS and stories of people that had it who say they started similar to me. But, I didn't have it. Anxiety did it all to me. My doctor told me I had benign fasciculation syndrome, or BFS. The dr said it can be triggered by extreme anxiety or stress. Basically, you just twitch and spasm in all parts of your body on and off for no reason whatsoever. It isn't harmful, it's just annoying. And the numbness is also caused by anxiety. I have been through this, he can come through this too. Therapy and medication WILL help him. He will be amazed just how much of a difference it will make on his body once his anxiety has been calmed. Best of luck!

Thank you, everyone. Two ALS docs looked at him and did a "thorough examination." They said they don't think he has ALS (no surprise), and thought twitching was from anxiety. However, because they didn't tell him they were 100% certain no ALS, he is still doubtful. Thankfully, they didn't order tests because they know the neuro hubby saw previously and said the previous doctor does good work. However, they also said he can get one done in 6 months if he is still twitching. Of course, hubby interpreted this to mean he might have ALS, and won't know for 6 more months.

I'm trying to be patient, but at this point I'm honestly getting pretty angry and frustrated that his visit today did nothing to calm him. He also didn't "argue" with the doctors about why he strongly believes he has ALS, which I had wanted him to do. He's had a total of 5 doctors tell him he is fine- 3 neurologist who specialize in this area. I am 100% certain though that he will soon want to go to another ALS clinic. This is like an addiction .

Thankfully, I am taking the kids tomorrow out of town on a previously planned trip, so I will have a good 5 days away from this- I just have to be kind for 24 more hours and then I will be on an emotional vacation where I can recharge.

That unfortunately is how health anxiety works. Doubting doctors is par for the course. Of course most doctors aren't going to tell you they are 100% sure of anything even when they are. My main advice right now is to give his meds time to build up in his system and see how they work for him. It's not easy on you or him, I know this from personal experience with my wife and I. Just try to remember he doesn't like to or want to feel like that anymore than you don't want him to.

I myself just delt with my sweet loving grandfather dealing with this crippling disease that I feel doesn't get much attention. ALS is a horrible disease that is hard to watch. However my grandfather noticed that it was hard for him to grasp things with his hands. He had went to a couple drs. And everyone chalked it up to be a bad case of c.tunnel. He ended up under going surgery for this and realized his symptoms did not improve. He then goes on to start having some complications swallowing, he wasn't sure if this was just with age so he just went on with his day. In a nutshell his symptoms got word and he decided go seek another dr. Up in the city and this is when the diagnoses was made. Never seen this man cry before if he genuinely feels that this is what he has maybe get a try and seek another opinion but I can tell you that having him be online is the absolute worst thing he can do. I hope he feels better soon and remember dont trust the internet we would all have a serious condition if we believed what they diagnose you with ;)

The tests, Drs etc are not reassuring because it's not treating the underlying issue which is anxiety. That's why he still feels this way. It will get better. As soon as he can get to a therapeutic dose, the thoughts will be come less and less. Would it be possible for him to get a benzo such as Klonipin or Xanax in the meantime? These can help stop the tremors and also stop the obsessive thoughts.

As a loved one, it's so hard to deal with. My daughter has anxiety as well and I get frustrated with her even thought I know exactly what's going through her head. I think this weekend will be a good one for you to recharge your batteries and be ready to tackle it again. Hang in there.

Wanted to add- this is taking a huge toll on his work too. His coworkers are all asking him if he's OK, and he is thinking about sending an ominous email to his colleagues saying he's going through some personal issues now. I think this is a terrible idea- I'd rather he just tell someone he is having some "health issues" and let the grapevine do the spreading. Personal issues are too interesting- people will dive into our private lives. Health issues are much less exciting.

I agree, saying "health issues" is a lot better! If he says personal then immediately they'll jump to the most interesting one - his marriage! Then it will be finances, no one will even think health. So yes, talk him into saying health issues.

He saw a psychiatrist, who said he had a classic case of hypochondria. However, hubby still isn't convinced, and is going back tomorrow for a barium swallowing test. He is CONVINCED that the news will be bad, and is actually upset with me that I am not panicking like him. Both of our careers are imploding as a result of this, which is unfortunate because we've both worked so hard to get where we are. I'm worried he might lose a promotion he got, since he basically has told his boss what is going on that and that he will be "unavailable" to help in his new role for the time being. He's also told some people at work he has a "serious medical condition."

This whole thing has been a nightmare- it's caused tremendous strain in our marriage, primarily because he thinks he is dying and that I don't care about his imminent death. He can't understand why I am trying to do my own job, as well as try desperately to preserve his own professional reputation and standing, when he is going to be dead in a year.

The good news is the psychiatrist told him this usually only lasts a few months, and he will be starting weekly counseling soon with a psychologist. Given that we are already 2 months into this firestorm, I am holding out hope we've reached the 1/2-way point. I'm just worried how much damage is being done to him and our family though in the meantime.

I'm having the als fear at the minute! I've avoided doctors so far as I know in my head that the chances of a 20 year old getting bulbar als without any of my family ever having it is so low! But it's the most scary thing in the world, It's all I can think about to!I hope the meds help get this fear out of his head, or at least calm the amount of anxiety he is having over this, your a star for being so supportive! It's a difficult thing to understand x

Thank you. I wish I could help him- his whole body is going haywire, and I'm very afraid he's not going to come out of this until something medically bad DOES happen to him- likely a stroke. I can't get him to calm down- he is stuck in ON mode, like a freight engine on a track- no stopping or changing direction.

I've been praying for God to help him... this problem is certainly much bigger than either of us. I'm hoping he gets good news today at the appointment and believes it, but I suspect that even if his test is clean, he will still say that "ALS people get normal results too."

20 is VERY unlikely to get bulbar- you'd have greater odds playing the lottery. My husband is late 30s with no family history, so he is also extremely low-risk. Despite the 2nd neurologist telling him, even with his symptoms, his risk is the "same as the general population", he can't believe it.

@Reallyworried93 remember you are not alone with your fears, and odds are that all of the thousands of "ALS worriers" are really just garden-variety "worriers", and NOT future ALS patients.